Grieving has been one of the toughest things I’ve had to do because of cancer. There were times when I was grieving my whole life, the dream of a future beyond 19, but now I am grieving many smaller hopes and dreams.
I used to sit in the window in my hospital room and imagine being in remission, or past the bone marrow transplant, or out of the hospital. I imagined that I would feel light, free, and grateful. I still believe in that day, but it is going to be a while.
Cancer has taken a lot from me. I wish I could hug my sophomore-year-self and tell her that she wasn’t going crazy, her grades weren’t dropping for no reason, the pain was real and not just some undetected virus (thanks Vaden). I wish I could have studied abroad without fighting my body every step of the way. More than I grieve the past, though, I grieve the future. I think about how I am missing out on a year and half (minimum) of experiences with my class at school. I grieve the security I used to feel in my body, knowing that I am at high risk for relapse and/or secondary malignancies or other life-threatening transplant complications. I grieve the stupid long blonde hair that used to be my safety blanket (it’s growing back brown and weird). I remember thinking that being infertile would be a problem I would be grateful to have – it would mean I was alive and able to have normal people problems again. But now it just seems like a glaring reminder that this nightmare will never really be over. I have lost my independence, my sense of community, and in a lot of ways I have lost myself.
I know that as long as I don’t relapse or have another severe GVH flare up or other life-threatening transplant complication things will get better in time. I know that I will return to school and make the most of it even without my class. I have learned a lot and met some incredible people who have changed me forever. But I’m pissed. Sometimes I even look at other people’s cancer blogs and feel jealous of their comparatively easy treatment regimens. 6 months of chemo and 2 surgeries? Please, where do I sign up.
The other day I was looking through my camera roll and found a picture of my arms from when I was really sick back in December. Throughout this process I have taken pictures of almost every horrific thing that has happened to my body, just for myself. I guess as a way to honor and remember all of this. The nurses were unable to get an IV and I ended up having bruises all the way up my forearms. I looked at the picture today and realized I could see at least 10 holes in my arms – failed IV starts. There are so many smaller pieces of pain and suffering throughout this puzzle that I barely even remember.
On March 24 I will be 6 months post transplant, further than I ever expected to reach. I am surviving. Surviving feels like being mugged on a street corner in northern Alaska and being left with nothing but a t-shirt, last year’s weird jeans that never really fit, and a broken femur. And then everyone is very excited for you, very excited that you are alive and it comes from a place of good will but it’s like everyone is blind to all of the damage and I feel like I want to scream that I just lost everything and can’t you see how awful this is?
Here is a picture of my arms: